Radiation and Invasive Lobular Cancer

Posted by kks @kks, Oct 3, 2022

I am reading a lot about Endocrine Therapy and Chemo options with ILC, but not much on Radiation. Does anyone have experience on effectiveness of this? Most of the research appears to be on ductal.

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Profile picture for dolphina3 @dolphina3

Hi this whole journey is as one fellow patient said to me, be ready for the circus.
I don't know your journey at 71 . I was 68 and am 70 now and if anything comes back I will go thru it all again.
Thinking of you and sending a hug.

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I totally understand your thoughts. I am 73 and have had a good prognosis with surgery, neg. nodes and clear margins with a very small, early detection. Chemo now due to my onco score being 31. Half way through chemo, it was so hard that I talked to my oncologist saying I wanted to quit because of the time and challenges this has caused. Long story short, he has given me an option for the 3rd treatment that may help the horrendous chemo reactions that I have had so I will go for one more of the 4 they are planning. I would say, weight your options. You don't say where you are on that journey, but I understand where you are coming from. I decided to take them one at a time and decide then. I am planning to do the radiation thinking that cannot take nearly the time or the side effects chemo has been. But, again, I had no idea how hard the chemo was going to hit me either. Probably naive. Anyway, the thought of this coming back is so frightening it spurs me on. God bless you. I know he will guide you.

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Profile picture for phonso @phonso

I totally understand your thoughts. I am 73 and have had a good prognosis with surgery, neg. nodes and clear margins with a very small, early detection. Chemo now due to my onco score being 31. Half way through chemo, it was so hard that I talked to my oncologist saying I wanted to quit because of the time and challenges this has caused. Long story short, he has given me an option for the 3rd treatment that may help the horrendous chemo reactions that I have had so I will go for one more of the 4 they are planning. I would say, weight your options. You don't say where you are on that journey, but I understand where you are coming from. I decided to take them one at a time and decide then. I am planning to do the radiation thinking that cannot take nearly the time or the side effects chemo has been. But, again, I had no idea how hard the chemo was going to hit me either. Probably naive. Anyway, the thought of this coming back is so frightening it spurs me on. God bless you. I know he will guide you.

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I am glad you have a good prognosis and tumor was small. They just told me we will do chemo surgery radiation and see how you do. I am 2 years post masectomy from lobular TNBC no nodes large tumor.
I had to be on a chemo pill for 8 months and it made me sick so I understand the not feeling good. I wanted to give it all I could too so it doesn't come back. I am eating to make sure my immune system is good. Christine funk is a breast cancer Dr. And she recommends gooseberry powder, amla, that is high in vitamin c. I also have a half cup of blueberries every day and drink match a green tea every day and eat broccoli daily. TNBC has a habit of coming back the first 3 years so I am trying to keep it away. Hoping your chemo is not to bad. Thinking of you and sending hugs.

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Profile picture for dolphina3 @dolphina3

I am glad you have a good prognosis and tumor was small. They just told me we will do chemo surgery radiation and see how you do. I am 2 years post masectomy from lobular TNBC no nodes large tumor.
I had to be on a chemo pill for 8 months and it made me sick so I understand the not feeling good. I wanted to give it all I could too so it doesn't come back. I am eating to make sure my immune system is good. Christine funk is a breast cancer Dr. And she recommends gooseberry powder, amla, that is high in vitamin c. I also have a half cup of blueberries every day and drink match a green tea every day and eat broccoli daily. TNBC has a habit of coming back the first 3 years so I am trying to keep it away. Hoping your chemo is not to bad. Thinking of you and sending hugs.

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I forgot to say radiation not as bad. I had 15 sessions. Skin got a little red and I had to breath hold because tumor wss in left breast. They will tell you what creams you can use and when. They help your skin.

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Profile picture for joanly @joanly

I have been diagnosed with invasive lobular carcinoma, surgery this Thursday with recommendations for hormone therapy and radiation. My tumor is grade 1A so radiation oncologist said it depends on pathology but based on pre-op biopsy and genetics he will “most likely “ recommend 3-5 days in the same week, of radiation. But he cautioned that after pathology it could change. He also said that he is sure that if I need more it won’t be much more. He also said that because it will be short term, the side effects will be minimal! We’ll see😊. I told him whatever it takes to kill the cancer, I’m on board!

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Hi Joanly! Your situation is almost identical to mine (to start with): invasive lobular carcinoma (Dec. 2023), removed by lumpectomy (Feb. 2024), with radiation and hormone therapy to follow. However, pleomorphic LCIS was also present, and the margins were not clear, so I need either another lumpectomy or go straight to a mastectomy (but then no radiation therapy, just hormone therapy.) How did the radiation therapy go? How is hormone therapy going? Thanks for any info you can provide.

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Profile picture for joanly @joanly

Thanks for the check in! The surgery went great. Sentinel lymph nodes were clean! phew!! Recovery was more comfortable than recovery from the biopsy’s!! I think I have the best surgeon in the country!!! I believe I did receive proton beam radiation but only for 1 session. It was MRI guided so I received it in an MRI machine. When I initially spoke with the radiation oncologist he explained that many studies had been done with my type and grade of breast cancer and then mentioned that with patients like me they were doing a study in which they will follow me for many years. Part of the participants would get radiation 5 times in one week and the other half would get it only once. Other places have done this and have shown no difference. I agreed to be in the study and was lucky enough to only get one treatment! Yay! It went well! As I see it, the less the better with radiation! Let me know how your surgery goes. I ended up having a lumpectomy on both sides because of papalomas on the right side. They took that out and there was no malignancy so no need for anything more on that side! Please let me know how it all goes for you!!

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@joanly how are you doing now? I would love to know more about your journey

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Profile picture for dolphina3 @dolphina3

Mine was also left side so they teach you a breath holding technique that protects your heart. They have ways to help you with this. They have you go for a , I call it mapping where you will do breath holding and they put tiny little dots in a few places that help them line you up for treatment. They usually give you time to practice before any treatments, I believe if people have medical problems with holding the breath they have another option to help with that. It is doable and treatments don't take long. You will be amazed at how little time if takes and then you go about your day. Usually you check in with in my case a nurse and she asked how I was doing, this was once a week. I am 2 years past treatment and doing well. Ask questions of your team any time you need too.
Good luck and thinking of you.

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@dolphina3 how are you doing? I’d love to hear more about your journey.

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I’m late to this conversation but would love any new updates on proton therapy radiation for ILC post lumpectomy. I had my surgery at UCLA and am scheduled for radiation in a few weeks and very nervous about it since they are suggesting whole breast radiation.

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Profile picture for valleymom @valleymom

@dolphina3 how are you doing? I’d love to hear more about your journey.

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@valleymom
Hi,
Thanks for asking.
I am doing well. In August I will have reached my 5 year aanniversary from TNBC.
How are you doing?

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Profile picture for dolphina3 @dolphina3

@valleymom
Hi,
Thanks for asking.
I am doing well. In August I will have reached my 5 year aanniversary from TNBC.
How are you doing?

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@dolphina3 congratulations! That is amazing. I am 1 month post lumpectomy and start radiation in another week. Dreading that and the estrogen blocker meds. Stay tuned!

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Profile picture for valleymom @valleymom

@dolphina3 congratulations! That is amazing. I am 1 month post lumpectomy and start radiation in another week. Dreading that and the estrogen blocker meds. Stay tuned!

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@valleymom
The radiation part itself doesnt take long. I had a masectomy with 3 weeks of radiation. Ask them what you can use on your skin after each treatment.
I didnt have to take the estrogen blocking meds with my type of cancer but I have seen on this sight about different types if you have trouble with one, also different dosages.
Thinking of you and sending a hug.

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